Nov 2, 2013

I only managed a couple of posts during my first-half-of-furlough-IDSA-guideline-protest adventure last month. To recap, we (federal employees, numbering about 600,000) were furloughed on Monday, October 1, when the government shutdown. My husband works a second job during summer, working for an airline, which gets us temporary flight benefits each year.

Out of work with the ability to fly for free and the need to see my doctor in Seattle (lyme care is not available where I live), I scheduled an appointment for that Friday, October 4. I'd been wanting to schedule a face to face visit, but work was way too busy to allow me to make it happen. I'd also been reading about the then upcoming October 5 rally in San Francisco to protest IDSA's lyme guidelines, which keep thousands of people from being diagnosed and treated (by thousands I mean many, many thousands.....likely hundreds of thousands). Any reader not fully familiar with lyme politics and "lyme denialism" should look at the resource pages on this blog, but especially Lymedisease.org and the movie Under Our Skin (available on netflix, at video stores, or free online, and very worth watching).

Since my lyme doc appointment put me half way to the rally the day before the rally, I was pretty determined to get there. I saw my aunt and a good friend in Seattle, and was still trying to see my brother's family (and meet my niece), but decided to fly to San Francisco (where a very good friend and her family live, including adorable twin baby girls I had not yet met). There were just enough flights to possibly make it, so I gave it my best shot.

My doctor appointment went long on Friday, because my doctor is incredible, so I had to bump flights around. I posted from that leg of flights, here and in another blog, because those flights were pretty amazing as far as neat people and a spectacular fly over of Mt. St. Helens. I think I flew through Portland, but all told I think the trip included 7 flights, so I already can't remember all the happenings of all of them. Each leg had some sort of excitement, from extra security checks to having my knife confiscated, to having the airline take my bag, to a couple of first class bumps (free cocktails!) to being waved through a special expedited security line I didn't know even existed.

So, furlough day 1 my husband and I got called into my sons school. So day one and two were mostly spent on sorting out classroom issues. Day three was spent en route to Seattle (mostly waiting in the airport here trying to get a flight out), Day four I saw my lyme doctor in Seattle and by late that night was in my friend's house in San Rafael on the eve of the rally.

Day five was the rally itself. I ended up late because parking was challenging to find and because my smart phone kept redirecting my trip. One of my wrong turns put me in a parking garage that wouldn't let me out. I had to 'come see them' and I was not happy.

I was hot, lost, late, sick, and tired. I had to get out of my car and come verify my situation. I'm past lyme rage now for the most part, thankfully, due to finally being diagnosed and treated, but my face still gets tired and angry looking sometimes (especially the Bell's palsy (formerly paralyzed) part of my face). This was all added to by the lighter than average door of my rental car, so that as I got out to deal with them, what felt like genlty closing my car door turned into a huge, loud, dramatic slam that looked a bit like a tantrum. Oh well.

So I missed some very interesting and furtunate events early on and/or before the rally started. You can read in corresponding blogs about the fire alarm that rang, sending all of the doctors out to the front of the building where the rally was being set up, and see some of the conversations between rally organizers and key IDSA members that resulted from that event.

The photos in this post are just a few to get started. There are more posted on my facebook page (Invisibly Lyme Montana) and there will be more in part two of this post. It took me longer than expected to post any of this, so I'll give myself a little more time to get it all down.

There's still an awful lot to say in part two, but some expected highlights include people I met (famous and otherwise), a few neat conversations, and lots of links to other resources and media from the event.

A spoiler is that I met Jordan Fisher Smith (from Under Our Skin) in person and got to tell him how much it meant to have seen his story, especially as an agency person, because it helps put a face to all of this for agencies. In the moment I was excited just to shake his hand, but I'm grateful to have gotten to have a more real conversation with him (the picture at left is Jordan speaking with one of the organizers at the beginning of his speach).

An ironic piece of that exchange (not truly ironic, but ironic in the mis-used sense that the word usually serves) was that in gushing my thank yous to Jordan for helping to change my life/outcome, I didn't recognize Andy Abrahams Wilson, standing near by. I never offered so much as a word of thanks to him for MAKING the movie! Even when I took his picture, I think I knew the crew from the movie was there, but I didn't know it was him. I was trying to take pictures of all the neat conversations that were going on, and that happened to be one of them. It's hard to imagine how many people each year will get diagnosed directly or indirectly because of that movie.

I'll have more on this in the second part, but it was really something to be around other people with lyme in real life. I love seeing people stand up for themselves and others in such a productive, positive, and (hopefully) effective way.